I got this this morning from a 30 year sufferer who wants to remain anonymous but wrote this for his supporter.  

and sufferers wonder why we supporters keep hanging in there?  This one really gets me.  

"Supporters go to heaven,
God knows them well.
They all go straight to heaven
'cos they've spent their time in hell."

thank you, sir.   :-*

Amen to that - don't know where we'd be without the supporters in our lives.  God Bless them all!

Grandma_Sweet_Boy wrote on Nov 16^th, 2004 at 3:05pm:

Amen to that - don't know where we'd be without the supporters in our lives.  God Bless them all!

Some of us are doing just fine... ;;D.  It was once said to me that a bad supporter is better than no supporter at all.  Beginning to believe that whole heartedly.

Ah Redd, you're right and I should have been more specific to say that for those of us who have good supporters, we are blessed.

I know that you do it on your own with a ton of other stuff on your plate too. I can't even imagine having a bad supporter - you're so very right, you'd be better off with none in that case.

If you need an email or PM supporter, I'll be there for ya in a flash!   :)

It's MY opinion that no supporter is better than a bad supporter...
;;D

vig wrote on Dec 11^th, 2004 at 10:12pm:

It's MY opinion that no supporter is better than a bad supporter... ;;D

My bad Paul...I did misquote that...

I still feel I'm better with no supporter than having a bad one.... ;;D

Again..my fault ... :-[

Reckon it,s a bit sad that any sufferer wants to remain anonymous,but if thats the way,thats ok

I agree Vig.

My fiancee's ex (doesn't that just say it all! LOL) used to tell him that he got them on purpose just to screw up her plans or her day.  Selfish B!

Those kinds of people are the ones who deserve the kind of hell a sufferer has!

I don't know which is worse... a bad supporter or no supporter at all. My mum is a bad supporter, but my friends have been great. I know it's not that simple... I just wish that when my dad was battling against the brain cancer, I managed to be a good one. I'll never know.... :'(

I think saying what you think to each other when the emotions are NOT tight is the best way.

I think it is just as tough for any supporter. My wife was saying earlier today that when I am in a cycle it feels like there is sickness in the house and everything just stops. She feels like throwing all the windows open and letting fresh air back in again.

I look at it this way. The strain is on both of us. We have to work on that as well.

To anyone that supports BLESS YOU xxx

Ellick

From a new supporter.
Why are there CH sufferers on this earth? So the rest of us quit whining and realize how good we have it!! I know there are other reasons that I will learn about later but this explanation will have to do for now! I'm new to this forum so forgive me if I'm out of line in any way. "Show me a guy who reads the owners manual BEFORE he takes the new car for a drive and I'll show you a liar!"

Quote:

From a new supporter. Why are there CH sufferers on this earth? So the rest of us quit whining and realize how good we have it!!

You will be the supporter everyone wishes they had my friend.

Remember that supporters have to occasionally whine and vent to. This is the place for you. Dont hesitate.

P.S. I'm a sufferer who who supports supporters.

Don wrote on Apr 24^th, 2005 at 8:47am:

You will be the supporter everyone wishes they had my friend.

You know what Don?  I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but.... [smiley=JAW_DROP.gif]

I'm a lucky woman....

Love, if its real, over rules all pain and disability.

ClstrHeadSupport wrote on Jan 12^th, 2005 at 3:09pm:

I agree Vig. My fiancee's ex (doesn't that just say it all! LOL) used to tell him that he got them on purpose just to screw up her plans or her day.  Selfish B! Those kinds of people are the ones who deserve the kind of hell a sufferer has!

I can identify with that point of view - my wife is apt to re\ct that way. Sometimes it does seem that all life kind of stops for my episodes.

3 months or more is a long time out of a well person's year to be sat around, impotantely watching someone suffer.

[quote author=Redd715 link=board=supporters;num=1100616917;start=0#12 date=04/24/05 at 12:19:23]

"You know what Don?  I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but....

I'm a lucky woman...."

Oh God yes... I just want to use this pain-free moment to say thank you to Arno for being the most special man any woman could ever hope to know. To be fair, he didn't walk into the CH part of my life knowingly - I had not had them for 13 years, until 3 weeks ago when they returned with a vengeance, so neither of us knew that we would have to be dealing with this hell now... but like the angel he is, he rose to the challenge without hesitation or complaint, and I appreciate his innate *good-man-ness* all the more for his being here for me "through the fire." I love you, Arno!

E.

Quote:

"You know what Don?  I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but.... I'm a lucky woman...."

Update on this...He sort of walked right back out again.. Not due to the HA's... he has personal issues that made the attempt at building anything just a (tad bit?) premature.

Sorry to hear that Redd, but I'm a firm believer that everything happens for a reason.  And I myself have learned that sometimes it takes years and years for those reasons to come to light, but when they do everything else falls into place.  

I need to get my wife to start posting here. She's put up with these once to twice a year visitors for 25 years and has never bitched. When she'd see me drag out the 02 she'd pour me a glass of ice water, put the cafergot on the coffee table, dump a couple of ice packs by the chair, grab the kids and head out for an hour. Those of you who do this alone, I keep on the same pedestal I reserve for single parents. I'm not sure I could face this alone, my prayers and thoughts to all of you who have to.

Guiseppi

i've always said:

I no longer fear Hell, for there in no pain worse than a cluster.


p.s. are you the same redd that skins for morrowind?

I have been on all ends of the supporter-no supporter- great supporter scale-
my exhusband was a very cruel person who used to tell me that he hoped it was a brain tumor-and wouldnt help me at all during attacks. He called me a baby when I would cry and pace with the pain.
I also went through it all as a single mom with three little kids, after my divorce- and during one episode- kids were awake and I got hit by a ch- I had the kids go next door to the neighbors (didnt want them to be scared), she called my mom to come help me. She was scared because she didnt know what was going on, and called an ambulance after she called my moms house. But she kept my kids for me until I returned and had gotten thru that particular episode.  I managed to keep it away from the kids as much as possible other times, because they were so young, they couldnt have handled my episodes without being scared.

My now husband is a God-send, he is very supportive, even if he doesnt understand, and he is a great help with the kids/house/willingness to help me even though there really is nothing that can be done during an attack (except get OUT OF MY WAY :)  )

I just wanted to add that a bad supporter is worse than no supporter at all, however I wish all CH sufferers a good supporter at some point. It makes it so much easier to have someone to talk to about it, who doesnt judge you or think you are faking it or a whimp, someone who can just pat you on the back and love you-- pain and all.

My thanks to all the good supporters out there. We appreciate you.

Amen, I think the poem is great.  

I also don't think you can be a bad supporter because if you care at all about what the person is going through and how the beast is destroying their life, you're a good supporter.  If you don't care or care more about yourself then them you're not a supporter at all.

Here's a poem from the point of veiw of a supporter. I just made it up so bare with me. Hope everyone likes it.

Hello. I'm a supporter
Hello. I'm a suviver.
I support, and I live.
Giving the best gift
I know how to give.
I do my best,
of I think's what right.
Getting with your pain,
in the dead of the night.
I live might be your love,
I might be a friend,
I might be a stranger,
but I'm here 'till the end.
Hello. I'm a surviver.
I support, and I live.
Giving the best gift,
I know how to give.

Always,
Felicia  8)

Like it! Absolutly true! Don't know where I'd be if it wasn't for my parents!!!!!!!!!!! :D

With the utmost respect to everyone and their personal reasons for their opinions...I think, speaking only for myself,  that no supporter beats a bad supporter.

Somehow, being mocked, degraded, belittled, made to feel guiltier than I already do...someone rolling their eyes while Im in agony...I could do without...at least I have peace alone.

I have a good supporter at this time in my life...but know both sides...had bad supporter for a long time.

Just speaking for myself... :)

But, in reality, whether a human being is there or not...we always have a supporter...and ultimately, we face the pain alone.  Just us and the beast in the ring...

Sometimes a tight supporter is more uncomfortable than using no supporter at all.............. ;)

exactly sb  ;)

My husband has been suffering from CH for 5 years.  It took 2 Neurologists and 2 Family Physicians to try and diagnose it, but none of them could see past "Migrains"  Because of this website, I diagnosed his problem and immediately started reading as much as possible on the subject.  I printed out the materials and took them to our family physician.  We are getting help for him (no cures-but Imitrex shots work while they last) but have been frustrated by my inability to help him when he goes through a bad cluster.  Sometimes I have to go for a walk just to keep from crying in front of him!  Your suggestions are welcome here.    :-*

Kenny wrote on Aug 28^th, 2007 at 11:53am:

My husband has been suffering from CH for 5 years.  It took 2 Neurologists and 2 Family Physicians to try and diagnose it, but none of them could see past "Migrains"  Because of this website, I diagnosed his problem and immediately started reading as much as possible on the subject.  I printed out the materials and took them to our family physician.  We are getting help for him (no cures-but Imitrex shots work while they last) but have been frustrated by my inability to help him when he goes through a bad cluster.  Sometimes I have to go for a walk just to keep from crying in front of him!  Your suggestions are welcome here.    :-*

Welcome Kenny!

I know all about going for walks or sitting on the porch crying when my dear is in cycle.  It's what we do.

As you know from reading here there is no cure.  But there is treatment and remission and help-aplenty.  I would encourage him to come here and read and digest and learn all he can.  Knowledge is power and can help during the darkest cycles.

My largest frustration, like yours, is not being able to help.  My clusterhead wants to be left alone and that's what I do.  It goes against everything in my nature to walk away from this beast but if that's what my dear wants, then that's what I'll do . . . thus the walks and the porch  :-/.

I would also encourage you to have a frank discussion about his needs during an attack.  He may not want you near but "near-by."  Or he may like a massage or hot coffee or whatever.  Find out what he wants from you and how best to facilitate it - even if it means he wants you to take a walk.  At least you KNOW and can respond to this creepy beast who interrupts our lives.

Keep reading and don't be afraid to ask questions.  Someone here will always be by shortly to help.

Welcome to the family.

I have just signed on so I can post in the boards.  My husband has had CH for about 10 years.  Diagnosed 6 years ago.  He is in a cluster right now, for about 4 weeks.  We have 2-4 weeks left of this life-sucking episode.  He just went back to the doc today, usual stuff is not working this time.  Looking into getting O2.  I hope it works.  My problem is to try to get hubby to not think its his fault when we can't go and do things.  He keeps apologizing, I keep telling him its okay, its not your fault.  I can see him ageing before my eyes, each episode (2x year) takes its toll.  I'm starting to cry as I type this, I'm at work and can't get him out of my head.  I know I have to be the strong one, and keep reminding him that it will be over in a few weeks, and to hang in there.  I feel guilty when I get a good nights sleep, so helpless that there is nothing I can do but be there when he wants me.  Thanks for letting me unload, none of my friends or family realize the depth of the pain he endures and how soul-sucking it is.  I get regular migraines, so have an inkling but I know its only a glimmer into his world.

frozzy wrote on Oct 22^nd, 2007 at 3:34pm:

.....  Thanks for letting me unload, none of my friends or family realize the depth of the pain he endures and how soul-sucking it is.

Hello Frozzy

I am sorry to hear that your husband is in cycle again and the usual meds are not working and that its getting you down.

I understand perfectly how you feel with what you typed up there because I felt exactly the same thing. My husband has CH and his last cycle was more than 8 months long. Many times I thought I couldnt take it anymore, but then somehow I carried on. CHers get pain in their heads, we get pain in our hearts. Both hurt like hell !

Ask him to join the Board and talk to others here, it will help him tremendously. Organise oxygen as quickly as possible. Go for the high flow rate, most starting at 12-15 L/min but some go as high as 25L/min. Apart from it working very well for most in aborting a hit, it also helps cool the face and head and has a calming effect.

Other things help too such as an energy drink slammed down quickly at first sign of a hit, ice cold wet towels applied to the neck and face or for some scalding hot shower can help too.

You can encourage him to drink as much water as possible during the cycle and at the start of the hit. Melatonin at night often helps warding off the night hits. Make sure he eats well, sleeps as much as he can, keeps fit and does suitable exercise. Encourage him to try relaxation techniques, keep the mind clear, focus on the now and here instead of fretting about the next hit.

Apart from meds that his doctor can prescribe, there are a lot of things that you and him can try and do to help make life just that much more bearable. Every little thing helps.

By the way, I am concerned that he has had CH for 10 years and the doctor doesnt know to prescribe him oxygen as yet. Maybe he/she is not that familiar with CH treatment. If the hits are bad, is he on a prednisone taper?  What meds has he tried ?

Keep yourself busy, keep doing the things you normally enjoy. Treat the hits as they come with whatever you have, oxygen, meds, ice, energy drink, strong coffee ...etc. Once they are gone concentrate back on life as normal as possible. You will see that 2-4 weeks will just fly past. Dont keep counting how much further he has got to go with this cycle, keep counting instead each day how many hugs and kisses and cuddles you have given him . They are what that count !  :)

For yourself make sure you spend time on your own doing the things you like, get yourself some nice chocolate and some fresh flowers. Go for a walk and enjoy the scenery. Take deep breath and sing whenever you can.

If you feel like crying, my shoulder is always here and ready for you, just drop me an email or a PM  :-*

Take care, God bless and painfree wishes to you both.

HUGS

It is amazing how great a childs soul is. I had nobody about 20 years ago, had a small 1 bedroom apt, my son sleep with me, he was about 2 or 3. He would be so quite, I would put milk in a glass for him in the fridge and he would get his own cereal in the morning, watch TV, or play. I even had a time at McDonalds in the parking lot were I had a dance with the devil in the back of an old dodge dart. I tried so hard to keep as much of it from him as I could but kids just know sometimes what is going on. He would tell me that he would buy me a new car and new house and nice furniture and lots of food. It was his way of saying it was OK and he loved me no matter how or where we lived. He is 21 and a very caring man. Women love him. He is very very understanding. But I haven't got my car or house yet! :) I am going to have to remind him of that. LOL Anyway, children have beautiful souls.
I have a great supporter now, and all the supporters here. Who could ask for anything more.
Love you all Paula

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

RabidClock wrote on Mar 12^th, 2008 at 7:46pm:

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

That says it all and tell me you are a fine supporter.

Big Hugs,
Jackie

RabidClock wrote on Mar 12^th, 2008 at 7:46pm:

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

You are so right, welcome, we will be with you every step of the way.

Off-Topic replies have been moved to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

So I haven't seen a whole lot of messages from actual supporters here...just CHeads that rave about theirs. It's been almost three years since the last comment on here, so I don't even know if anyone will read this.

Am I a bad supporter?  :-/

When my partner is in a cycle (such as he's been for the past four weeks) I hurt just as much as he does, just in a different way. His pain is physical, but it eventually goes away and he's fresh-a-daisy; mine is emotional and it hangs around all the time.

I read an email he sent to my sister regarding our recent vacation. He said his headaches almost ruined our vacation. I laughed at the "almost." As far as I'm concerned it DID ruin our vacation. It was not relaxing. It was not fun. It was torture. I asked him if we could just skip it and stay home since he had just begun a cycle the week before. He insisted we still go. Oh, yay. Yep, lots of fun trapped on the Amtrak with him and his CH; trapped in the rental car with him and his CH; trapped in the hotel room with him and his CH. Lots of fun!!! I know I'm not supposed to say these things and have more sympathy for his pain, but what about my pain?

I will admit that when he gets a headache I roll my eyes and think, "Here we go again. When will this end?" So I set his things out for him, gather up the kids, and head out the door...if he doesn't stop us.

I admire the people that try to hide it from their families so that they don't have to watch. I wish my partner would take a page out of that book. Instead, mostly, he asks us not to leave the house because it makes him feel badly, but then he won't leave the room to suffer on his own. We all have to watch and suffer with him. Misery loves company, right?

I am tired of getting up with the kids in the morning only to find his clothes strewn about the house, his pills and empty Imitrex blister packs strewn all over the countertop, and nasty, used kleenex lying about the general area of the garbage can, but nothing actually making it in there.

I'm tired of making excuses to my friends and coworkers about why I can't go out for fun, or why I can't work for them when they're sick, or why I'm always so crabby lately. I'm tired of lying to people when they ask, "How was your vacation?" "Oh, fun," I say. LIES! But if I tell the truth, I'm just a Debbie Downer, bitching about my boyfriend's headaches. No one wants to hear about it. I can't talk to anyone but him about it and that just makes him feel bad.

The only thing he and I talk about anymore is his headaches. Correction: he talks, I listen and clean up after him. He's very messy when he has a CH, and that's understandable, but when the headache is over, pick up your damned mess. I basically just feel like a nurse-maid. I clean the house, take care of the kids, and make sure he feels good about himself.

When can I start feeling good about myself? I keep all my feelings to myself because I don't want to make him feel worse about his situation but I know I can't do this much longer. I'm tired not just emotionally but physically as well. I feel like a single parent but instead of just having the two kids, I have three. I don't feel like a loving spouse. I don't feel appreciated.

Any help out there? I'd like my family to remain in tact and in order for that to happen, I need some pointers from other supporters, not Clusterheads. Clusterheads are too caught up in themselves to know what it's like to watch this month after month.

Am I a bad supporter?   :'(

You're a terrible supporter. You will never understand his pain unless you go through a cycle yourself. NEVER!
When you married, did your vows include something like " be there for each other in sickness and in health?
You think you have it bad? WOW

Hi Jen.

Sorry you all are having such a rough time. 

I don't know you, Sweetie, so I can't say if you're a bad supporter or not.  My guess is that you are a worn out, beat down supporter.  We, as supporters, tend to suffer some of the same symptoms as our clusterheads.....frustration, exhaustion, depression, anger.  I have a feeling that may be where you are right now.  You're tired out and just want your life back.....so does he, I'm betting.

You need to take at least a few hours just for you.  Do something you enjoy...I don't care if it's a walk in the park or a bubble bath.  I'd suggest an appointment at the salon or a new outfit... ;) 

Maybe your vent/post here will even help a little.

I've been a supporter for many years and it's not always easy.  It does get better though...just think of the good times before this cycle and know that each day you all will get that much closer to those better days.

Now....

demonh8r wrote on Mar 27^th, 2010 at 1:08pm:

You're a terrible supporter. You will never understand his pain unless you go through a cycle yourself. NEVER! When you married, did your vows include something like " be there for each other in sickness and in health? You think you have it bad? WOW

I find this out of line and disrespectful to more than Jen.  There are many, many supporters on this site who are here daily doing what they can.  The fact that we don't feel your physical pain damned sure doesn't mean we don't suffer right along with you.  I see that you are a newbie and a young man so I'm not going to flog you....yet. ;)

Quote:

So I haven't seen a whole lot of messages from actual supporters here...just CHeads that rave about theirs. It's been almost three years since the last comment on here, so I don't even know if anyone will read this.

Jen, This particular thread that was stickied that you're referring to being 3 years old...is one of hundreds of on-going threads in this  "supporters section"    May I suggest you do some reading down below?  You will see that, besides Jackie...we have some wonderful folks who try and answer questions and give support on a daily basis.

HOLY SH*T Jen...the anger in that post leaps off the page and SCREAMS...truly stunning. I hope it helped to get that out......

Any help out there? I'd like my family to remain in tact and in order for that to happen, I need some pointers from other supporters, not Clusterheads. Clusterheads are too caught up in themselves to know what it's like to watch this month after month.

Posting on a clusterhead forum and telling clusterheads not to comment is like telling the sky not to be blue. We tend to be a herd of cats...good luck corralling us.

Not even categorizing and insulting an entire group of people based on experience with one will shut us up. For God's sake, have you read what's available here...from clusterheads and supporters alike? It has literally saved lives...and if I were you I would read, read, read, read, read, read......

It has been said that there is no pain known to man worse than a cluster hit...I don't believe that. Personally, FAR WORSE is the pain I feel when my loved ones and friends witness...knowing there is nothing they can do. It tears my guts out and gnaws at my soul...."too wrapped up in myself to know what it's like"? Not sure I could be accused of worse.....most times it's ALL I think of....

Is it really your intent to inflict pain for pain? Is THAT somehow going to make you feel better? Thinking no...thinking you are hurting bad...and knowing you are in the right place. The help is here for the asking
and there are others here, far wiser, who can offer the help you need....drop the anger and be open...please.

You have my prayers....

Jon

Jackie, its the truth.
Your right. I'm young and a newbie to this forum, but not new to the pain darlin.
She asked "Am I a bad supporter?"
Just giving my opinion.

Jen, you asked "Am I a bad supporter? 
When my partner is in a cycle (such as he's been for the past four weeks) I hurt just as much as he does, just in a different way. His pain is physical, but it eventually goes away and he's fresh-a-daisy; mine is emotional and it hangs around all the time."

Because you hurt when he hurts, it says you care, you love, you feel. A bad supporter would feel nothing, would care not. I know CH is relentless and evil and hurtful and agonizing, and some people just don't "get it". But if you love him, keep feeling, keep loving and keep caring. Yes it is hard, but it makes you human and a good person, and gives you a "golden pass" in the next life.

I sit hear reading, with tears running down my face. I'm right with you with the frustrations and fear of this THING that has changed my life. But bigger than the THING is my love for my husband. He is a good man, that doesn't deserve CH. Yes he is a PITA (pain in the ass), and yes he is terrible with $ and doesn't do things exactly as I do. But he is a good man, and adores me, and would give his life for me as I would for him.

I believe that love for your partner is still in you too, that is why you have stuck by for so long. It's ok to say "what about me?" Talk to people when you can. Their empathy and sympathy does remove some of the edge. There are many out there 10 times worse off. I read Eckhart Tolle's books during a past "dark period" in my life and he helped break it down to one simple message for me. Live my life in the moment with positive, forward movement. Let go of my ego and the negative and figure out why I am here.

I've never been in the military service, a nurse or a mother. Being a CH supporter gives me the credentials to say I've enlisted in all 3 careers. Being a CH supporter tells my why I am here. Being a supporter is a selfless act, and shows me how I can give back and love and learn to do for others. It is my test. Believe me when I say, I'm NO angel. I tremble at the thought that this could be "the rest of our lives." It makes me sad and then mad. And I find the good in the day, moment, minute and live. Keep living Jen, keep giving. Find a moment for yourself, give to yourself, and live.

Here for you as I know you are for me.

demon....

I have no objection to you stating your opinion of her as a supporter.

Check you PMs......darlin.

dsw...

Wow!  Beautiful post....on a lot of levels.

Big hugs,
Jackie

dsw,
Have to agree with Jackie, you're post is awesome!

Jen-S,
Anger is okay, better to get it out here, than to turn it inside on yourself or take it out on your family.  I'm a supporter, been at it for over 25 years now, so I can understand your feelings (I truly can, btdt).  For many years, during my husband's cycle, I not only worked full-time, I ran the house, took care of all the yard work and then took care of all the animals on the farm (cows and horses).  There were times when I felt like packing it all in and getting the hell out of dodge.

I think the major difference between where you are right now and where I've been, is that my husband was always extremely aware of how his headaches affected our family and did his best to keep things *normal* when he wasn't in pain.  Plus, our close friends had seen him get hit and they actually *understood* when I had to turn down invitations or leave early because his head was starting to hurt.

I had my husband read your post and believe it or not, he pretty much agreed with you.  These are *your* feelings and you are entitled to them.  I think that what might serve you and your partner best is a *sit down* when he's not in pain.  You don't have to tell him everything you told us here, but you can tell him things he can do to make it easier on everybody, himself included.  Sometimes it's the little things (like putting his dirty kleenexes in the trash and maybe throwing his empty blister packs away) that will take things over the top and cause major problems.

Talk to him.  A word of advice when you do talk to him, don't play the blame game, guilt is a bitter pill to swallow.  Keep your conversations to *I feel*, *I am*, *I*, not *you* or *your headaches*.  Neither of you can control the fact that he has headaches, neither of you can control the fact that his headaches do disrupt your life, but what you both can do is not let these headaches ruin what you have.  It will take work on both sides and imho, if you didn't care, you would never have made that post.

By the way, there are clusterheads on here that are also supporters (their partners have clusters too) and there are clusterheads on here that do their damnedest to make sure that their partners don't end up in as much pain as they are.

I hope you come back.  If you see soemthing negative, take it with a grain of salt.   I'm not Mother Theresa and somewhere along the line, I dented the hell out of my halo and broke one of my wings.

Carolyn~aka~deltadarlin

Another OUTSTANDING post on this thread, Carolyn.

Brew wrote on Mar 28^th, 2010 at 10:22am:

Another OUTSTANDING post on this thread, Carolyn.

Absolutely!

Great post my friend!

Bravo Carolyn, right back at you!
diane

I'm a supporter and yes, I get angry.  AT THE BEAST, never at my clusterhead,  IT'S NOT HIS FAULT - he didn't ask for this, he just has to bear it.  Would you rather your sufferer had something that would kill him?  Something that was painful AND fatal?

I've walked out of movies and theatres, changed drivers on busy interstates, given up entertaining, made excuses to friends and family, and am damn glad to do it.  The hardest leap for us to make as a family with clusters is to TRULY live between the hits.  It's one thing to say it, another to live it.  Life is what happens between hits.  Everything else is a minor temporary annoyance.

For better or worse, in sickness and in health.  It isn't easy, it isn't always equal, but it's worth every pain free moment.

Here here! Some great posts! Yea we've chased people off or left parties in a haste. It's what we do. When I hear his tank (I swear one of these days I'll name it) I get him his ice pack and red bull. Then I try to keep the house quiet. Thankfully, since he learned about O2, we're not talking about a long time (so long as he gets right on it).

As hard as it is for us - can't imagine what it's like for them.

I know its been a while since this was posted and I'm not sure that anyone will read this. But I agree and disagree with the ranting and raving that you did. I understand that it is hard to be a supporter. But you REALLY need to understand what your clusterhead is going through. I can't speak for all of us clusterheads but i can give you some insight itno the emotional challenges we face as well. It isn't only physical pain that we feel. I don't wish for you to be in pain but if you could feel ch for just a day then you would understand. There was a point in my life that I got so depressed and angry and sad about ch that i didn't even get out of bed. And not only because of how it affected me but how it affected others. I got to a point where I wouldn't even leave my house for fear that the slighest activity might bring back the beast with a vengence. I didn't speak to anyone I didn't laugh I literally didn't do ANYTHING. It took all i had emotionally and physically to get out of bed to go to the bathroom. And that is what i think you may be overlooking. Please remember that it isn't only physical pain that we feel.
I completely undersatand your frustration about him leaving a mess when the ch subsides but I must also let you know that once you get a ch you feel like you have just run a 3 day marathon and all you want to do is collapse. I don't know if any of this will help you. I hope it does help you to understand a little bit more where he is coming from . And please don't think I am attacking you. You have every right to be upset but maybe you sould cut him a little bit of slack. And like i read previously you really should sit down and tell him how you feel. It may help more than you think it will. So give it a try and let me know how it went.
    Best of Luck

Yea I have no doubt that Jen and the rest of the supporters (myself included) have a pretty good understanding of what our loved ones are going through when getting hit. I think just as a sufferer sometimes needs to post on CH to vent about his or her pain, frustrations with doctor, insurance companies or life in general - so does a supporter somtimes need to let loose a little. It seems to me that is what Jen was doing and I'm glad you recognize that she was obviously frustrated but clearly still cares.

I believe that to be the purpose of "SUPPORTERS CORNER". We are here to support other supporters. We encourage new sufferers that post elsewhere to send their supporter here so we can support them too.

Clearly Jen needed some advice in coping with what sounded like an awful CH Cycle her husband was having. If we can't offer a place for her to do that then I think we are failing with our purpose. 

Hopefully if any sufferers read the posts in Supporters Corner they understand that we are working together to give each other the energy to be there for our dear sufferers and not take personally any comments made about the sufferer themselves.

Christy

QnHeartMM wrote on Jun 3^rd, 2010 at 12:43pm:

Clearly Jen needed some advice in coping with what sounded like an awful CH Cycle her husband was having. If we can't offer a place for her to do that then I think we are failing with our purpose.  Christy

What she said so well, I echo completely!! 

Sometimes just knowing another supporter will come along and say "there there" to me is enough to keep me going.

And personally, I would never wish CH on anyone - not even so they could "understand."  Sure, I've never felt the pain of CH, but I've lived with it in my life for more than 20 years and know it as intimately as my sufferer.

What really stinks is she only posted once which would lead me to believe she did not get the support she was looking for. I hope Jen is still out there reading and know that we ARE here for you, we DO understand how difficult it is, and to please feel free to post (or PM us individually) if we can help or if you just need to talk.

Being a supporter is a process.  It changes with each CH, each cycle, each PF period. Maybe the process is ugly sometimes, but it's important for the angriest person to have a place to go to vent.  We all know how hard it is to watch a person suffer with these horrible headaches.  It's broken up plenty of relationships.  My husband and I had to sit down during a PF period many years ago and set up some "rules" about where and how we would deal with the headaches when they occurred.  We had to make a pact that he went in the basement (before any diagnosis or meds were available to us) and I took the kids upstairs.  I can't be in the same room with him, and he can't stand to be around anyone.  We didn't come to that overnight.  It was a process.  Let's give a little elbow room here.  It takes a long time to learn how to manage this illness and balance family/work demands as well.  There is no guide.  Without this forum, we are alone.

Beautiful post, thank you!

chwife,
Excellent post.  I was lucky, we had friends who actually *understood* what my husband was going through.  So did our families.

You don't have to have pain to understand pain, you don't have to lose somebody to understand grief and you don't have to go through many things to have empathy.

I fully agree that supporters also need support. I can't imagine what they go through. I am thankful to have a great supporter. And sad to say that this person is not a member of my family. Well they are but not by blood. And I couldn't be more thankful to have this person in my life. And not only do they support me but i support them. I know it can't be easy to live with knowing that there is absolutely nothing they can do for my pain. So I just want to say to all of you supporters out there that there are not enough words to express how thankful i am for each and every one of you ;D